April 7, 2008

The American Academy of Pediatrics Shows Up in Autism Treatment

The Defeat Autism Now! Conference was last weekend and the big news was not that Jenny McCarthy showed up, but that the American Academy of Pediatrics showed up.

After years of inaction and obfuscation, this was action number two taken by the AAP in just one week.

AAP not only showed up, from what I can put together, they really listened. They saw that the doctors presenting were their doctors and that the families in the audience were their patients. They got that the research and the interventions had a solid base and that medical approach to treating what is currently diagnosed as ‘autism’ has already begun with out them. They got that it is time for them to begin investing in what we have started.

I hear that they understand the multisystem failure that is going on in our kids and the multi system approach that is needed to address it.

I think they got a taste of how wrong it has been that parents complaints to, and questions of, doctors have been treated with such hostility, and that doctors who spoke up for our children were ostracized.

… and I got the feeling that they might even have been a little impressed with the way that our community has taken back an entire arena of medicine from drug companies and insurance companies and hospital systems and all other things big medicine.

The first step in building bridges, real relationships, is to show up and listen. They have done that.

But now comes the hard part for the AAP… what to do with that information. They know it is real, they know that we are on the level, and they know that the treatments are working. Can they take that and do what really needs to be done, no matter where the trail leads?

Are they ready to announce that vaccines are the big trigger? I don’t think so. I would be surprised if they were ready to do that yet. Vaccination changed their profession dramatically, and for the better, and to come to terms with the fact that it has crossed the line and gone too far… to admit out loud that they have caused so much damage… that will be very difficult. Not just for the AAP body as a whole, but for each individual pediatrician.

Are they ready to start participating in real research with us? I think they very well might be on treatment options, but good vaccine research, a real vaccinated vs. unvaccinated study? That is the million dollar question.

In this Age of Autism (to borrow from Dan Olmsted), where parents like me have been burned and burned hard, action talks and bullshit walks. We watch every move that docs make and judge carefully who is really looking out for the best interests of our vulnerable children, and who is looking out for their own interests.

I have, in no way, hidden my contempt for the actions of the AAP over the last decade for what they have and have not done in the autism epidemic, and for the potential disaster that will take place if in fact David Tayloe does take charge of this body.

But the current leadership of the AAP has gotten my attention with their actions in the last week. I think that they are in a rare moment in time where a state of flux is occurring, and there is a possibility of them turning a corner and making a real attempt to redeem themselves.

Voices that are usually squelched are being heard.

I think this is a fragile window. Failing to continue to move forward with real action, and assuming that reverting to bullshit public statements will placate autism moms and dads, would start closing that window quickly. The reign of David Tayloe would kill it stone dead.

I have a few words of advice for the AAP if they are concerned with stopping the slide of public trust and keeping the vaccine program from crumbling:

1. Say goodbye to your ego.

If you got into this business to be treated like the big guy and want to stay the big guy, then you will only get in the way of bringing our children back. If you can get past yourself, you will start to see beautiful stories of healing in families that have been devastated. You have the chance to become a part of something amazing that is happening in families who were told that their child was no longer functional and should be put away. Choose to see life return even at the expense of your pride (and your Mercedes and your vacations).

2. Tell the truth, the whole truth and nothing but the truth. No matter what happens, no matter the fall out, no matter the shame. You have one chance here to clean out the cancer that is the lies that have been told to American parents by the CDC about vaccine safety. If you take this time to CYA, then you won’t get another chance.

3. Find a nice, dignified excuse to set David Tayloe aside as the next AAP president and choose someone of integrity and character like Jay Gordon who will treat vaccine injury with seriousness and the intricacies human body with humility. I personally won’t listen to any doctor who listens to David Tayloe.

4. Actually participate in real vaccine debate. When what passes for a debate only includes those whose livelihood depends on vaccination continuing, it is not a real debate.

What has been referred to as the ‘vaccine debate’ for the last four years since the IOM decision has looked like this: A panel of doctors from the CDC, AAP, IOM, NIH, HHS having mutual admiration society catered by GSK while congratulating themselves on eradicating polio and rubella, inside a building owned by a hospital that is owned by an insurance company that is owned by Merck, while parents and the doctors who listen to them and heal their children are locked outside banging on the door trying to get in.

None of the parents’ points, complaints or questions are addressed, and if one does manage to get in, she is told to sit down or is escorted from the building.

Literally.

Registered nurse, Lyn Redwood, one of the first mercury moms, a very smart, dignified and soft spoken woman who had testified before congress, when attending a CDC public meeting, asked why the committee would not state a preference for pregnant women to get thimerosal free vaccines. She was told to sit down.

When CDC held a press conference on vaccines in 2005, we went to the HHS building in DC, but weren’t allowed in the room to ask questions. Parents were escorted to a ‘holding area’ with a TV so we could watch it remotely. Lyn was there with us.

Later, we tried to talk directly to pediatricians. Generation Rescue, a brand new organization at the time, rented a booth at the 2005 AAP convention in DC, and Lyn and her husband, physician Tommy Redwood, were among the parents there to share with your doctors.

Our message was printed on a large banner that stretched across the back of the room, “Autism is Preventable and Treatable”. When we arrived, The Redwoods, along with other parents who had been raising valid and responsible questions about the vaccine program, were prevented by security from entering the building to work at the booth.

The most heart breaking thing about that fear based, controlling decision, was that Lyn’s recovered son was also turned away from the building. His name was actually printed on the list given to us as to who would not be allowed to man the booth. Pediatricians from around the world had a chance to meet and interact with a recovered child face to face three years ago. The pictures I brought of Chandler were paltry replacement for a real live talking boy, but you locked him out.

If you want to build faith with us, then a good sign that you are ready to take responsibility for your actions would be to apologize to the "DC 7" Scott Bono, Laura Bono, Lyn Redwood, Tommy Redwood MD, Will Redwood (now 14 years old), Wendy Fournier and John Gilmore.

And then continue the REAL vaccine/autism debate that begun on Larry King last week. Get a hall in DC, a really big one, and let’s face each other and slog through all the research and records and deal with this. You are gonna get yelled at, just like Jenny yelled at Karp, you are gonna see a lot of tears, you are going to have to eat a lot of crow and it will all be on the record. But that is what it is going to take to put humpty dumpty back together.

5. Apologize for harming our children, not treating the injury and not listening to parents when they tried to tell you about vaccine regression and recovery.

We know that you were lied to. We know that you have to depend on the CDC to give you guidance. We know that they have orchestrated this nightmare charade.

But you did not meet your ethical obligations to proof them. Your leadership continues to hold out crap studies like Verstaeten, Denmark and Fombonne to disprove the vaccine autism link. You need to remove your stamp of approval from them, admit that they don’t prove what people have claimed that they prove, and join us in asking that they be retracted. If you do that there is still a chance to salvage something.

You have serious culpability here, but we know that you are not the source of the big lie.

6. Clean up this mess. Take action now. If you try to play the ‘death by committee’ game like the IOM did, parents will start tuning you out at the first mention of the words ‘task force’.

You have to start with this: Autism treatment is not a top down operation like other approaches to defeating an illness you are used to. If you could have understood it the way we have illnesses like rubella, you would have by now. If it could be tackled the way HIV was, then the Autism Speaks modus operandi would have yielded results, but it hasn’t.

Autism, or ‘Autisms’ as successful practitioners have come to define it, is not one thing, and is extremely complicated. So you can’t start with the ‘disease’ and then apply lessons to the child. You have to start with the individual child to get to the ‘disease’

It is a varied syndrome and our kids pick a la cart from a long list of physical problems.

Get a copy of Bryan Jepson’s book, Changing the Course of Autism in the hands of every one of your members.

Tell them to call their patients who are diagnosed with autism into the office for a long sit down to find out what parents have been trying with them, what is working and what is not. Have them listen to the child’s whole story, a COMPLETE history of all that has happened since before conception. They will learn huge amounts of information doing this.

Walk into the DAN! docs offices and start putting eyeballs on our kids. Physically examine them and start testing.

Get DAN! docs to hold training sessions all over the country for AAP members.

Invite local parents to speak to your pediatricians and tell them what they know. We are not doctors but we are experts on our children.

(You wanna be really smart? Do what the smart DAN! docs do. Encourage your docs to find the brightest autism mom in town who is treating her child, the one that the other mom’s call with questions, and hire her as their research assistant and parent liaison. They are plowing through the research every day, they live in an autism lab, and they talk to all the other researcher moms every day.

They are expert medical investigators.

Take advantage of them.)

And when your members start reporting the things that they are seeing to you, listen to them and coordinate that information.

Bottom up, bottom up, bottom up.

7. What ever you do, you better do it with the doctors we already trust.

8. What ever you do, go where the results are. Your work towards recovering our kids should not include learning from people who have not contributed to the recovery of a child with autism. Look for the people who are bringing children back and find out what they are doing.

And if you give people who still aren’t sure that there is even an actual increase in the rate a seat at the table, you will just be wasting our time. This is about discussion and cooperation that leads to action, not pontificating and lecturing in order to hear yourself talk. If they are interested in genetics or counting heads, then leave them to their business. Their business is not the business of treatment, and this is about treatment.

9. Whatever you do, you have to offer total and complete transparency about everything.

10. And whatever you do, please understand, you have to do it fast.

With our autistic children, we have a window of time, starting when their injury happens, to heal them. That clock starts the minute we get a diagnosis and we work like madmen to heal our children before that window begins to close.

Now you are in our shoes. You have been given the diagnosis, that parents were right and that you have lost them. You have a window of opportunity to heal that broken relationship before that window starts to come down hard and fast.

I hope you understand that you have to work smart, work quick and work from our organizational model, not yours, to keep that window from slamming shut on you.

And I hope you understand that the window will start falling hard and fast on June 4th.

Because if you are not with us in Washington, we will know that what you have done this week is bullshit.

UPDATE: Katie Wright comments:

"It was great that the AAP finally showed to a DAN! conference. Jenny McCarthy had to shame them into it, but it is good they came. Dr. Cooper did not just walk in and out he sat through several presentations over three days. I told Dr. Cooper that the AAP needs to get up to speed- NOW. There is no time to waste, they need to send TEAMS of physicians to DAN! and Autism One. If they want to start earning the respect, rather than the ire of the parent community, the AAP should start booking those hotel rooms in Chicago now. They can also make inexpensive and easy changes by updating the website so their autism information can reflect 2008, not 1998. The AAP has much to prove to our families, let's hope they take on this challenge."

8 comments:

Holding It Together said...

I attended the conference on Friday & Saturday and was very encouraged by the reports from the leaders at DAN! on their meetings with the AAP. Things are definitely moving in the right direction.

I am planning to give our pediatrician a copy of Dr. Jepson's book - he's pretty entrenched but I'm hoping he will at least read it.

Sandy Gottstein said...

Ginger, What the AAP, CDC, NIH, FDA, IOM etc. didn't count on was not only you parents' countless numbers and ceaseless dedication to your children (how could you not be broken by your broken hearts, but you were not), but they never dreamed of, never expected your brilliance. Shine on, amazing parents.

All the best, Sandy Gottstein
http://www.vaccinationnews.org

Tom said...

Ginger,

I predict that a lot of pediatrician's offices will be getting this little post in the mail sometime real, real soon.

Terri Lewis

DrSaveLives said...

"AAP not only showed up, from what I can put together, they really listened. "
So they are trying.

But then you say:
"The reign of David Tayloe would kill it stone dead."
And
“Find a nice, dignified excuse to set David Tayloe aside as the next AAP president”

So you want the AAP to build bridges, but this is how you reward them for trying? How is this helpful dialog?
I am a pediatrician and actually know Dave Tayloe Jr and Sr. I would be honored and pleased for either to take care of my grandkids. Autism is just one piece of children's health issues. The AAP has to be concerned with many competing issues. Granted it is the only piece you are interested in, but still one of many.
Please clarify for me what Dr. Tayloe said on the Larry King Live show that deserved your wrath. I saw the show and did not find anything he said offensive or inaccurate - certainly not as offensive as Jenny McCarthy's constant interruptions and saying "bullshit" when she did not agree. That was hardly a conversation. My experience in a busy pediatric practice has been similar to his. In the past 15 years I have not seen a child whom I thought had been injured by a vaccine given by me. (when we had the old DPT vaccine, kids would get fevers and occasionally have febrile seizures from the fever - they were not harmed, but it is not plesant)
Science does not advance through yelling matches. It is not about who wins a shouting match or argument. It is about reviewing and studying a preponderance of data produced by careful unbiased studies by numerous individuals until a consensus is arrived at. Except in the case of Dr. Wakefield, we try to have data that does not lie. You should try it sometime.
Get Jenny to post some tapes of her son - pre and post - on You Tube so people can see for themselves whether her son's degree of autism matched the children of your readers. I have never had a patient that "began" autism with a seizure. Sounds like there is much more to his story than an autistic child who was cured in a year by shear determination....

journeytocrunchville said...

Aaackk, your email box is full! :)

I am trying to send you something. A very intriguing article. Can you email me when you have a minute? The article is fascinating. I'm also trying to find out how to get in touch with David Kirby as I think he'd be interested in it as well. Any idea how to do that? It could certainly be another headliner and another brick to take this vaccine industry apart.

Ginger Taylor, M.S. said...

Crunch,

Cleared mailbox. Email me.

Ginger Taylor, M.S. said...

DrSaveLives,

“So you want the AAP to build bridges, but this is how you reward them for trying? How is this helpful dialog?”

This is helpful dialog because the AAP needs to wake up to the insane amount of damage they have done to our kids by ignoring our reports and the science behind the theory that autism is largely a vaccine injury.

Doc, I really appreciate you asking these questions, most docs won’t even engage on this… I hope that you will take my answer to heart.

But my appreciation that you are here does not make me any less mad at you for not doing your job a long time ago and investigating the autism/vaccine connection for yourself.

You don’t seem to think there is a vaccine/autism connection. But you are wrong. We have been watching it happen for twenty years and reporting it to our peds for that long.

If the AAP has listened to Barbara Loe Fisher in 1985 and started treating vaccine injury with the seriousness it deserves, then my son would be healthy today.

Most never listen to our reports of vaccine injury. (The docs that do listen get ostracized from the medical community.)

We bring research studies into their offices, and they will not read them.

We bring or recovering and recovered kids into their offices, and are THRILLED to tell them there are treatments that are working, and they do not listen.

ALL of this happened with my own ped. A very good doctor. After a hour of trying to get him just to read the vaccine package insert for the vaccine he was administering, that my son had his first reactions to, and having him politely turn me down, he finally said, “listen, I just go by what the AAP tells me. I barely have time to keep up with what they send me; honestly I don’t have time to read the research you are bringing me.”

I said, “Well then who do I go with this stuff?”

He said, “Go to the AAP”.

So I did. You read above the account above the reception we got. Medical professionals, autism parents who had testified before congress were not allowed to get into the building.

You don’t seem to understand that you (collectively), in ignoring us, have been killing and maiming our children with chemical cocktails that are not safe for them!

CRAP research comes out and we scream to high heaven that it stinks to high heaven and you continue to ignore us! Are you still telling yourself and your patients that Verstraeten and Denmark and Fombonne are ‘well constructed’ studies that disprove the connection?

MY SON HAS LIFE LONG BRAIN DAMAGE BECAUSE MY DOCTORS WOULD NOT SEE HIS 3 MONTHS OF FEVERS AND UNCONSOLABLE CRYING, AND TWO YEARS OF CONSIPTATION AFTER HIS FIRST HEP B SHOT AS A VACCINE REACTION! They continued vaccinating him until he regressed! They even gave him 3 more doses of the Hep B shot when the damn package insert said that if they react to it once, don’t give it again! And they did it at the same moment as giving him 3 and 4 other vaccines! (Do you read and abide by the package inserts in your vaccines? We find that most docs have no idea what they say. Doc will even claim that a shot is thimerosal free, and are surprised to find that they are not when we insist they pull out the package insert and check.)

After all… The AAP said it is safe so why should they believe what they see in front of their eyes? And as you say, you all have very busy practices and who has time to actually investigate a mom’s claim that her child is having a vaccine reaction? New moms are just over worried, right?

And you want to know why we are pissed?! How many times do you go to your own doctor and the AAP and the CDC and politely say, “excuse me, I hate to trouble you but I think perhaps you might have turned my child into a vegetable with the mercury and aluminum you injected into him, could you please read this research I have here and check my theory?” and get ignored and insulted, before you get pissed and start cussing? I did that for a year and a half, getting one blow off after another, reading more and more accounts of parents who were getting the exact same treatment, until doctors actually started yelling at ME for even questioning vaccine safety. Then I started getting angry.

I actually read the account of how the IOM came to their bullshit decision and how parents were treated when they showed up to the ACIP to ask questions, to find out about the insane conflicts of interest at the CDC, and they made me angry. Have you looked into any of this?

Have you read Evidence of Harm? Have you read even my simple treatment of Verstraeten and Denmark? Do you know Fombonne is a joke? Have you read the research I have posted on this link?

Doc you need to understand, we are right and you are wrong. And there are people who need to go to jail over this.

And the idea that the doctors who go on TV and make false claims of vaccine safety, blatant, easily disprovable, untrue statements, should not even be yelled at, shows just how out of touch you are with what is going on. (I don’t know you, and as mad as your statements make me, I am glad that you are here and actually engaging me on this, because most docs still have their heads in the sand. But you have to wake up and ask yourself, why are so many parents so mad?)

Vaccines trigger autism. The science is there, but AAP won’t call it to your attention. Hannah Poling and at least 9 other families have been paid by the government for their autistic child’s vaccine injury. Julie Gerberding got on TV and said that vaccines trigger autism, yet the denial is so strong that most docs are still poo pooing the idea.

You included.

And I get why. I totally get it. I am one of those mom’s who has huge guilt that I didn’t trust my instincts and stop vaccinating Chandler earlier. We didn’t feel good about it, but let our peds talk us into it.

How much guilt is gonna come down on you when you have to face the fact that you are responsible for permanently damaging children and perhaps even causing the SIDS deaths of children that you truly believed that you were doing the best possible thing for?

How mad are you going to be when you realize that the AAP had research to back parents claims years ago? How furious are you going to be when you find out that the CDC actively lied to the medical community to keep the vaccine program at full steam and cover their collective asses?

Because they have made you complicit in their crime, and you let it happen because you are not thinking critically about what you are being fed.

When you realize this, might you get angry with them and even utter an expletive?

“I am a pediatrician and actually know Dave Tayloe Jr and Sr. I would be honored and pleased for either to take care of my grandkids.”

David Tayloe Sr. caused severe brain damage in a child for giving him a DTP shot after he had shown a previous reaction to a DTP shot. He had to pay the family more than a million dollars (the jury wanted to make him pay 3.5 mil). You think that his son might learn the lesson that not all vaccines are safe for all kids?

No.

This is David Tayloe Jr. statement from Good Morning America about three weeks ago. Please take the time to watch the video and read the entire post, then come back and tell me if in an age where autism, which is approaching 1% of the population, and has been admitted by Health and Human Services to be a vaccine injury, that a man who believes that ‘All vaccines should be given to every child’, is the right choice for the AAP right now.

This is why I have such contempt for David Tayloe, Jr's dangerous statements, and say that having him the head of the AAP will contaminate any chance of parents and peds coming together finally.

Do you believe that Tayloe’s statement is a responsible one? Or is it bullshit? Or something in between?

(This is not a rhetorical question… I really want to hear from you on this. It is time for you to start thinking critically on what your friend is saying. Nice, well intentioned people can still be very wrong, and when those nice, wrong people are in positions of power, they do horrible damage).

“Autism is just one piece of children's health issues. The AAP has to be concerned with many competing issues. Granted it is the only piece you are interested in, but still one of many.”

You mean like Asthema, Eczema, Type 1 Diabetes, ADD and all the other autoimmune disorders that are on the rise? Have you ever asked yourself, ‘why am I seeing so many more autoimmune disorders?” Well it looks like all those autoimmune diseases that are on the rise may be tied to the 36 vaccines before 18 months phenom.

When you inject increasing amounts of adjuvants like mercury and aluminum, there will be some who can’t clear them, and whose immune systems will just stay on high alert and start moving through the body like looking for targets like Germany in the 1940’s.

“Please clarify for me what Dr. Tayloe said on the Larry King Live show that deserved your wrath. I saw the show and did not find anything he said offensive or inaccurate - certainly not as offensive as Jenny McCarthy's constant interruptions and saying "bullshit" when she did not agree. That was hardly a conversation.”

Make sure you read all three of these posts very carefully.

My experience in a busy pediatric practice has been similar to his. In the past 15 years I have not seen a child whom I thought had been injured by a vaccine given by me. (when we had the old DPT vaccine, kids would get fevers and occasionally have febrile seizures from the fever - they were not harmed, but it is not pleasant)

It is easy not to find something when you don't look for it.

Have you gone back to look at these kids 10/15 years later? Do you see more health problems, learning disabilities, behavior problems, etc?

When I check the safety testing of the first Hep B vaccine my son reacted to, I found that the children were only followed for THREE DAYS!

How many autism cases have you seen, when parents came in and said, “it started after our last appointment when he got x number of shots”. Because here is the big problem, and if you hear anything from me, please listen to this and examine it carefully:

There is also something important happening here in terms of well meaning pediatricians being taught to pass the buck.

The government recognizes that vaccine induced encephalopathy exists and pays damages for it. Here is part of the description of what vaccine induced encephalopathy is:

(1) A significant change in mental status that is not medication related; specifically a confusional state, or a delirium, or a psychosis;
(2) A significantly decreased level of consciousness, which is independent of a seizure and cannot be attributed to the effects of medication; and
(3) A seizure associated with loss of consciousness.

(D) A "significantly decreased level of consciousness" is indicated by the presence of at least one of the following clinical signs for at least 24 hours or greater (see paragraphs (2)(I)(A) and (2)(I)(B) of this section for applicable timeframes):

(1) Decreased or absent response to environment (responds, if at all, only to loud voice or painful stimuli);
(2) Decreased or absent eye contact (does not fix gaze upon family members or other individuals); or
(3) Inconsistent or absent responses to external stimuli (does not recognize familiar people or things).
http://www.hrsa.gov/vaccinecompensation/table.htm

Sounds just like autism, don't it?

Have you ever read this before? Has the AAP called this to your attention?

That is an exact description of what most of us observed in our children when they regressed. When I went into my peds office with my son hanging limp in my arms, not responding to external stimuli, with absent eye contact, with dramatic change in mental status and a very marked decreased level of consciousness, and told him it all started after his vaccines, he should have diagnosed him with encephalopathy. A MEDICAL condition, that my MEDICAL doctor was charged with diagnosing.

But pediatricians are not taught to look for vaccine injury. Only autism. Because no one is responsible for autism. (It is a mysterious condition... no one knows the cause... there is no cure... blah, blah, blah) So instead he sent him to a speech therapist and a psychologist that diagnosed him under a DSM IV code of autism. His case was never medically investigated by the man responsible for medically investigating it.

He passed the buck because if he had done his diagnostic job correctly, he would have indicted himself and the vaccine program in my son's brain damage.

And my doctor was a very good doctor! He was not a shlub. He was not a jerk. He was doing what the AAP taught him to do.

In my son, vaccine induced encephalopathy and 'autism' were the exact same thing, with the same symptoms, but described from the point of view of two different disciplines.

Doctors have to be taught to PROPERLY diagnose vaccine injury.

It is the AAP’s job to teach their members to practice MEDICINE in their offices and medically investigate what is going on with the individual child in front of them. Not just hand them off to behavior specialists.

“Science does not advance through yelling matches. It is not about who wins a shouting match or argument. It is about reviewing and studying a preponderance of data produced by careful unbiased studies by numerous individuals until a consensus is arrived at.”

Yes, but you (again, collectively) won’t let us have conversation about the preponderance of the data or point out the huge bias and flaws that we find in the studies that you guys are using. After all, we are scientifically illiterate, emotional parents and just looking for someone to blame. So why should we be allowed to get into AAP meetings and speak at ACIP meetings?

Sit down at a table with us and actually read these studies with us, and come to reasoned conclusions with us and we will stop yelling at you.

Look at our kids lab results and see all the mercury and aluminum that is pouring out of them when we start chelation.

See for yourself all the GI damage our kids have and watch what happens when we change their diet and give them meds for yeast.

Stop making stupid statements like kids should get 36 shots in 18 months because, “its recommended”.

Stop treating us like we are stupid with ‘the evidence shows no link’ statements. We have read the evidence and you haven’t. You have just assumed that the AAP is giving you an accurate assessment of it. Let us prove our case to you.

“Except in the case of Dr. Wakefield, we try to have data that does not lie. You should try it sometime.”

Please don’t be an ass. Last weekend I referred you to a page with 33 studies on it that support the vaccine autism connection. If you see problems with any of them, then show me where the problems are and we can discuss them. Have you even gone to that page yet?

Until you actually point out a lie in any of the studies that I am proffering, you don’t get to be a jerk to me. As a matter of fact, according to my time table based on how I have been treated by you guys, I get to blow you off and ignore you and demean you for about a year and a half before you get too loose your patience with me.

“Get Jenny to post some tapes of her son - pre and post - on You Tube so people can see for themselves whether her son's degree of autism matched the children of your readers.”

Jenny is making a documentary and everyone will get to see. I saw clips of it at the DAN! Conference last weekend. Evan was an autistic little flapper. Evan is not autistic any more.

“I have never had a patient that "began" autism with a seizure. Sounds like there is much more to his story than an autistic child who was cured in a year by shear determination....”

(I have heard of cases where that happened, however…).

If you read her book you will see his autism didn’t begin with his seizures. The book starts out with them, but that is because that was the first wake up call that she had that something was really wrong. Evan was already autistic, but she just thought his autistic behaviors were just Evan. Many parents have the same experiences, especially when they are a first born and the parent does not have experience with a typical child to compare it to.

She didn't know it was autism until a neurologist who saw Evan for his seizures told her it was autism.

He had multiple evals at UCLA and from the state got a full autism diagnosis and qualified for state services. We were in LA when Chandler was diagnosed and can attest to the fact that California does not like to give our 299.00 diagnosis. Because it costs them about $100,000 in services. They don't hand them out like candy.

I went through the same denial process with my son. (And i was a therapist, not an actress.) Chandler’s toe walking and spinning were cute for a few months, until I started coming to grips with the fact that he had stopped calling me mommy and lost all his words except for ‘uh oh’ and ‘all done’. I have an undergrad in child development and a masters in adolescent and family counseling and I knew what autism was, but still went back to that, “well when kids get mobile they loose interest in speech for a minute (even though he had been walking for a while) and boys develop more slowly than girls, and he is just really cranky, he will be fine in a week or so”. I did that for two or three months until I let the word ‘autism’ move from the back of my mind to the front of my mind. It was just too scary.

Jenny is doing mostly the same stuff with her son that I am doing with mine. Her results have been more dramatic, but then again, she has had a lot more cash to implement these medical interventions more quickly than we have.

But check out the great things we have seen in Chandler because of DAN! methods.

This stuff works! Don’t take my word for it, come to the Autism One conference next month and see for yourself. I would pay your way if I could, but I would have to sell my car. Come see what the AAP saw last weekend and see if you are not convinced.

Look Doc, the reason we are so mad is that there are boat loads of research and information out there that proves us right, and docs won’t listen.

I spend most of my time doing this stuff these days and I can’t keep up with all the information. But the guys to whom you guys pay dues to sort through this stuff and tell you what is going on are not doing their job.

Because no one wants to believe that it is the vaccines.

Vaccines have changed our world for the better (my grandfather died of polio when my dad was only seven, I get it) but we crossed a line somewhere in the last twenty years and now it is too many vaccines, too soon, too close together, with too many toxic ingredients, not safety tested in combination and being given to kids who are not screened to see if they are healthy enough to receive them safely.

It is making our children very sick.

Please, please… I am literally begging you… slow down, approach this with some humility, keep in mind the consequences to innocent children if I am right and David Tayloe is wrong and just start checking all my claims out.

What can it hurt for you to read the links I have provided and see if you can punch holes in my logic?

Only your free time on evenings and weekends.

Small price to pay if it prevents damage to the children entrusted to your care and heals the kids in your practice with autism.

Ginger Taylor, M.S. said...

Doc,

This just in and I wanted to call it to your attention.

Just one more incidence of us being locked out of the places where the calm, rational, science based debate is supposed to be going on.

Autism Parents Need A Seat At The Vaccine Table

When we don't get to participate in policy making discussions, and those there will not bring our points to the table... that is bullshit.